I'm a pharmacologist, freelance science and medical writer, educator, and speaker with a passion for public understanding of science and medicine. I earned a Ph.D. in pharmacology and therapeutics from the University of Florida and a B.S. in toxicology from the Philadelphia College of Pharmacy and Science. I report on all things pharmaceutical and scientific from the Research Triangle Park area of North Carolina.

Ethical Justice, But No Financial Rewards, For The Henrietta Lacks Family

It took more than 60 years, but ethics has finally caught up to a particularly fast-moving area of science: taking tissue samples for genetic research. Thanks to the efforts of a dogged journalist, some very thoughtful science leaders in Europe and the U.S., and an ordinary family willing to learn about a complex subject and then to do the right thing to help you and me and our descendants, a long-standing wrong has now been fixed. ~ Art Caplan

Cover of The Immortal Life of Henrietta Lacks by Rebecca Skloot

Above is the central paragraph of Dr. Arthur Caplan’s ethical take on yesterday’s medical research milestone: An agreement has been reached between the U.S. National Institutes of Health and the family of Henrietta Lacks, a poor, Black, Virginia tobacco farmer whose voracious 1951 case of cervical cancer gave rise to one of the most seminal resources in medical science: the first population of human-derived cells to ever grow in a laboratory.

The dogged journalist Caplan cites, science writer Rebecca Skloot, spent over ten years crafting the convoluted and emotional story of the Lacks family and their complex relationships with scientists in the best-selling book, The Immortal Life of Henrietta Lacks.

The NIH agreement, detailed here, will now restrict the distribution and access to complete DNA sequences from Henrietta’s cancer cells to scientific researchers funded by U.S. government grants. Researcher requests will now be reviewed by a six-person panel that includes two Lacks family representatives. Furthermore, publications resulting from such work will now be accompanied by an acknowledgement of Henrietta Lacks as the source of the cells (PDF).

London-based Nature journal writer Ewen Callaway provided the most comprehensive and behind-the-scenes insights on the negotiations and agreement with the Lacks family in these twoarticles and podcast in the August 8th issue.

What’s so special about HeLa cells?

On October 4, 1951, Henrietta Lacks, a 31-year-old wife and mother of five, died of cervical cancer in the segregated colored ward of Johns Hopkins Hospital in Baltimore. As with the majority of Hopkins cancer patients at the time, biopsy samples had been taken of her cancerous tumors earlier and brought to the laboratory of Dr. George Gey, where his wife Margaret and technician Mary Kubicek worked.

With Henrietta’s unknowing donation, the Geys and Kubicek overcame more than 20 years of laboratory failures: The team succeeded in keeping human cancer cells alive and growing indefinitely. These cells, known as HeLa (HEE-luh), gave the medical world the first chance to experiment with human cells without having to go back to individual patients every time specimens were needed.

However, neither Henrietta nor her family were fully informed that her tissue had been taken. Moreover, her survivors were completely unaware until the mid-1970s that cells from her cancer continued to grow around the world as medical research tools.

After their original isolation, the cells quickly began to play a central role in medical research in the 1950s. University of Minnesota researchers discovered that HeLa cells could be infected with the virus that causes the debilitating muscular disease, polio. With that knowledge, the cells provided a quick way to test the effectiveness of the Salk polio vaccine, then under development. If a vaccinated patient made antibodies that would prevent the disease, then their blood plasma would prevent polio infection when mixed with HeLa cells and poliovirus in the lab.

Ironically, the “factory” for growing and shipping these cells was led and operated by African-American researchers and technicians at Tuskegee University at the same time rural men were unknowingly being used as experimental subjects to study the long-term progression of untreated syphilis.

Skloot’s book follows the subsequent series of events that would be unconscionable, and some illegal, under today’s standards of medical ethics and regulations of human subjects research.

So widespread was the subsequent distribution of HeLa cells over the years that over 76,000 research articles have been written citing the use of these cells. Like so many other researchers and those in training, I was the beneficiary of Henrietta’s cells for experiments that formed the basis of my 1989 PhD dissertation work. We also used HeLa cells for the first peer-reviewed publication from my independent laboratory at the University of Colorado in 1995 where we extended our findings into human leukemia cells.

We’re also still using HeLa cells as teaching tools, both for science and in the medical humanities. I recently did exercises with local AP high school biology students and my colleagues Christy Flint and Debra Bailey at the North Carolina Museum of Natural Sciences in Raleigh where we visualized the chromosomes of Lacks’s cells while discussing their class reading of Skloot’s book.

The latest storm

Earlier this year, the majority of the DNA sequence from one population of Henrietta’s cancer cells was published by German scientists at the European Molecular Biology Laboratory (EMBL) in Heidelberg, again, without the knowledge of the Lacks family. Nature had also been fielding a more extensive paper on the HeLa genome from University of Washington researchers led by Dr. Jay Shendure.

As Shendure’s team was funded by NIH, the medical research agency of the U.S., NIH director Francis Collins and Kathy Hudson, deputy director for science, outreach, and policy, initiated discussions in April with members of the Lacks family to inform them of the significance of this work to them and the world. Skloot was also involved via telephone as an observer but was instrumental in setting up the meetings as described in this Q&A yesterday with Bob Grant at The Scientist.

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David, while your article is quite interesting, I would strongly suggest that either you or an intern proof-read your work better before publishing it. There are so many mistakes that it was not only difficult to read in places, but it makes you look like a less educated man than I know you to be.

Thanks so much, Gene. Yes, there were quite a few mistakes I didn’t catch. I could blame it on breaking my glasses last week and having to use a very old pair. But I won’t. I’ll just say, “Thank you,” for the thoughtful note!